Well, I had the angiography yesterday. Spoiler alert: the procedure itself went fine. But some weird stuff surrounding it!
I showed up at 8:30 for a 10:30 procedure. Got all prepped, got my IV, waited on a stretcher in the ACU. Didn’t come to get me until 11:30. Took me down to the procedure room (it’s a full fledged OR), waited at the door for another 20 minutes or so. They came out and told me they had to move my procedure back because . . . wait for it . . . somebody had a stroke in the CT machine. So, back up to the ACU. THREE hours later, I finally went back down. I wasn’t upset with them – not their fault a guy had a stroke. Dr. Kaminsky said they got to him in time, so I guess it was worth it for a good outcome for him. But six hours is a long time to wait for a procedure you’re already nervous about.
As I said, procedure went fine. It’s pretty weird – you’re awake for the whole thing, experiencing a lot of strange sensations in your head.
But here’s the really strange part. Dr. Kaminsky came up afterwards to tell me results. According to him, my jugular is not compressed at all. It’s flowing fine. So is everything else in my head. I apparently have some cholesterol plaque in my carotid, and some venus abnormalities I’ve apparently had since I was a fetus. That is all.
I can’t decide if this is good news or bad news. I guess it’s always better not to have a compressed jugular. But it takes us back to square one in terms of diagnosis. I didn’t see anything in my CT report about an elongated hyoid bone or anything. So I don’t know if this throws my entire ES diagnosis into question. The jugular theory explained the dizziness so well. Now I’m wondering if the vagus could be impinged without having a vascular component. I see Dr. Hepworth on the 13th. Really looking forward to hearing his take on this.
Poor you, especially hearing that someone had had a stroke in there before you but good that hopefully they’re okay!
Very glad that you don’t have jugular compression! Dizziness with ES is a common symptom, you don’t always find out why. There are exercises which can help, you might find this discussions interesting:
The Vestibulocochlear nerve if irritated can cause dizziness, it’s not always mentioned as one of the nerves compressed by styloids, but I did find a mention in a research paper, it’s explained in the Newbies Guide discussion ES Information: Common Symptoms & Possible Explanations For Them:
'Vestibulocochlear Nerve, Cranial Nerve VIII, if damaged can cause positional vertigo, hearing loss, and tinnitus . Again, I haven’t found much research about this symptom/ damage to this nerve, but found in one research paper ‘The first group of symptoms, [concerning classic symptoms as compared to vascular symptoms] are characterized by pain located in the areas where the fifth, seventh, eighth, ninth and tenth cranial nerves are distributed and occurs in most of the cases after tonsillectomy which may have been performed many years earlier’. (Source Dolan EA, Mullen JB, Papayoanou J. Styloid-Stylohyoid Syndrome in the Differential Diagnosis of Atypical Facial Pain. Surg Neurol 1984, in the paper: Eagle’s syndrome: a case of symptomatic calcification of the stylohyoid ligaments, by Victor B Feldman).
Ear symptoms can also be caused by the Chorda Tympani Nerve, there’s info in this discussion: Unusual ear symptom ’
Of course, it could also be the Vagus nerve as you say!
I’d be wary of pinning too much hope on getting an explanation from Dr Hepworth; many doctors are skeptical of the less common ES symptoms, & can be dismissive, so you may not get an answer.
Wow what an ordeal. I would be less than thrilled about waiting three hours to get that over with, especially knowing someone else had a stroke. I’m so sorry! How long were you there total? And did they go through your wrist or leg? Two things I have been wondering about as I sit and obsess about having this done…
I was really frustrated when Dr. Hepworth last month said my ES diagnosis was in question because of the results of my ultrasound. Now it was recently put back on the table when I saw Dr. Kaminsky so it all feels very confusing. It feels like starting all over and that really sucks. So while I’m glad your jugular vein is healthy, I’m sorry you didn’t get many answers. Frustrating to go through an invasive test like that and not find much!
I honestly considered this as a possibility for me when Dr. Kaminsky questioned and seemed confused by the results of my ultrasound. He said he didn’t believe the jugular could even be compressed as far down my neck as the US report said. It made me wonder if anything is even wrong with it?? I guess I’ll find out soon.
I’ve just commented on another discussion with info that JustBreathe, who knows loads about jugular compression & testing posted:
There’s a few discussions going on at the moment about jugular compression, so the link might be helpful- JustBreathe gave info about how the ultrasound test results may be limited.
I was there about 11 hours total. I was pretty upset when they first sent me back upstairs. But then I checked my email – I’m a real estate agent, and I had a counter from an offer we had submitted the day before. So I put my buyer under contract, and that kept me busy for a while. Plus gave me a good story for Facebook
Yeah, I get the feeling there is some philosophical difference between Kaminsky and Hepworth. My brother is a doc, so when Dr. Kaminsky came in to talk about my results, I got my brother on the phone. Dr. Kaminsky was telling him that he sees ultrasound reports from Vascular Institute of the Rockies that give a location for jugular occlusion, and that location doesn’t even exist along the jugular. He told my brother what it was, between two muscles or something, but I didn’t recognize the names. At any rate, he didn’t seem to think too highly of VIR.
I also realized that they never changed my head position during the procedure, so I don’t know if that made a difference. Of course, I don’t recall them moving my head during the ultrasound either. And Dr. Hepworth never said the jugular was only occluded in a certain position. He said it was completely occluded.
They went through both wrist and leg. Groin is to access veins, wrist is for arteries. So I have two bandages now. My arm was kind of sore for the rest of the day, and I’m still not allowed to lift more than 10 pounds. But all in all not too bad.
Knowing what I know now, I definitely wouldn’t hesitate to have the angiography. Keep us posted on your situation!
Thanks. I was just reading that thread this morning. Interesting. Dr. Hepworth initially told me a certain velocity number over which he would know I had compression. But then it came back at zero, which even more strongly indicated compression. I am so anxious to hear how he interprets my results from yesterday. Problem is that now my brother has talked to Dr. Kaminsky, so he is going to be skeptical of anything that indicates there could still be compression. Not that he is the “boss of me” or anything, but he’s pretty much my closest support on this stuff.
Will do! What Dr. kaminsky told your brother is essentially what he said about my US report. Haha. That the jugular doesn’t even run between the Omohyoid and some other muscle so he didn’t understand how it could be compressed there. My velocities were at 160 or so on both sides yet I only have pain on the right. I sure wish these doctors could work together better, but whatever. I am still waiting to schedule mine so I hope I can do that soon and get it over with!
I can understand the frustration in working with so many specialist. Maybe this can be of some help.
We have to keep in mind that each specialty is looking at the situation from a different lens, scope of practice and even terminology. For us as the patient we can then feel like we are stuck in the “doctor wars” as you mentioned but what we don’t hear is the conversation that they have with each other. The fact that these doctors are referring to one another shows they are in fact having active conversation about a very complicated issue and are working to learn together. Also, keep in mind that all of the doctors mentioned above are nothing short of brilliant.
Dr Hepworth is the patients advocate in all of this and speaks everyone’s language (including ours), that is one of his greatest gift. So hang in there! Gather all of the information and let the dust settle. We are all in the middle of a huge medical learning curve that is vastly complicated.
Oh, and slowing down to breathe is a great thing as well
Thinking of you both in this journey
There are many cases of IJV compression from different muscles in the neck. Typically this is addressed with physical therapy focusing on relaxing and lengthening the muscles involved. If either you or @Bopper are interested in a referral for that kind of treatment just message me. I know a very good PT extremely experienced in all of this on the Front Range.
@Bopper
Sorry to hear you had such a long wait…so did I!
Swedish is the top hospital in the state for diagnostics and treatment for stroke and head injury. Mine procedure was delayed 4 hours due to an emergency stroke flown in for my NIR (partner of Kaminsky) had to take. They were lucky to have him. I. just saw it as a different quarantine spot
@JustBreathe Dr Hepworth had me wearing a neck brace for periods of time throughout the day. It made my pain worse, even after experimenting with it quite a bit, and that is when he set me on this new course to have the angiogram. Previously had talked about a muscle block, but that was off the table after the neck brace failed. I’m open to trying physical therapy but it just isn’t something that’s been brought up.
I agree with you despite my frustration. It is fine and good to be open about disagreements and new perspectives especially when it comes to medicine and science but sometimes I feel like I’m stuck in the middle. I’m happy to be part of the learning experience with these issues but also my primary concern is to feel better.
Truth. The “Doctor Wars” comment was definitely hyperbole on my part. These two clearly work together and refer back and forth. And they are clearly both brilliant. I’m disappointed right now, but looking forward to what Dr. Hepworth has to say about this latest development.
Yeah, I obviously couldn’t be upset with them, and I was thankful that this guy had such a great stroke team available to him. It just messed with my nerves to have to wait six hours for the procedure. I was pretty calm while waiting, but kinda crashed into a little crying spell when I finally got down there. Fortunately it didn’t last . . .
Thanks. I have had TMJ issues for years, so I’m already seeing one of the top neck PTs in town. I think all of the neck work is probably part of the reason my symptoms have improved over the past 2.5 years.
I’m assuming Dr. Kaminsky knows that your head would have needed to be in the position where you feel the dizziness most severely if he was checking for vascular compression. If he did the angiography w/ your head in a comfy neutral position, the styloid won’t be compressing the jugular or carotid & obviously blood flow isn’t disrupted. Did he, by chance, move your head into different positions during the test to see if blood flow changed in certain positions?
It may be that your styloids weren’t commented on because no one was looking at them specifically. They are often overlooked when other issues are being investigated.
You’re also right that the vagus nerve could be causing at least some of the trouble. Because it can affect blood pressure levels & low bp can cause dizziness, perhaps that’s the next thing to consider.
I assume he would know that as well. Dr. Hepworth is the one who referred me. I assume he sent over whatever information he needed to know. When I had my preliminary appointment, I brought the ultrasound and the reports, and I told him what Dr. Hepworth said about the blocked jugular. We specifically talked about the possibility of ballooning the jugular. And before the procedure yesterday, he asked me a question about leaky cerebral spinal fluid. I told him that that has never been mentioned, and that the problem we had been discussing was jugular compression. So there’s no question that jugular compression was on the table. But no, he did not move my head at all. It was in a neutral position the entire time.
I have had low blood pressure my entire adult life. But the dizziness I’ve experienced in the past seven months is not the same as the lightheaded feeling that comes from low blood pressure. It’s difficult to describe. At any rate, we will see what Dr. Hepworth has to say in a couple of weeks. It will be interesting!
Bopper, Dr Kaminsky asked me, “has Dr. Hepworth brought up the possibility of a CSF leak?” As well… At my consult. But it has never been mentioned by Dr. Hepworth. It’s really eerie how nearly identical this process has been for us.
but good that hopefully they’re okay!
